Greater Asbestos Victims Support Group

Annual Report 2015

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Greater Manchester Asbestos Victims Support Group Annual Report 2015

Contents

1. Introduction. 2. Advice and support for asbestos victims. 3. GMAVSG activities. 4. Support Group. 5. Meetings and events. 6. Donations and financial report. 7. Acknowledgements.

1. Introduction

Despite earlier predictions of the mesothelioma epidemic peaking around 2015, numbers appear still to be rising. New mesothelioma referrals continue to comprise nearly half of our casework load, continuing the pattern of previous years. Government figures have revealed more than 2,500 new cases of mesothelioma in each of the last two years in the UK. Predictions for the epidemic peaking are now being pushed back to 2020, or later, in this country. The continuing trade in asbestos in some parts of the world, and in particular developing countries, will see new epidemics unless we are able to put a stop to this trade.

2015 saw a new Conservative government elected. The Asbestos Victims Support Groups’ Forum UK (the Forum) launched its Charter for Justice, outlining key demands for reform, including fairer treatment on social security benefits; a compensation scheme for other asbestos victims, similar to the Diffuse Mesothelioma Payments Scheme, where former employers or their insurer cannot be traced and sued; and for Government to ensure that more money is found for mesothelioma research. It is fair to say we are not pushing at an open door with the new Government but we will keep pushing nonetheless.

Despite the unpromising political landscape there have been a few significant achievements and improvements in 2015. Firstly, in February 2015, compensation from the Diffuse Mesothelioma Payments Scheme was increased from 80% of average civil compensation awards to 100%. GMAVSG members had been prominent in the Forum’s ‘100% Justice’ campaign that had argued for compensation to be paid at this rate from the outset. It is a shame that the Government did not listen to us earlier and that so many (over 300) of the earlier applicants to the scheme had been short-changed.

Secondly, the Ministry of Defence announced in December 2015 that they were going to introduce a new lump-sum payment of £140,000 for military veterans who had contracted mesothelioma following exposure to asbestos in the armed forces. The Royal British Legion and several naval veterans had campaigned for improvements to the status quo. Veterans are unable to sue the MoD for asbestos exposure prior to 1987, cannot claim compensation

2 from the Diffuse Mesothelioma Payments Scheme and previously had no analogous scheme which would pay compensation. The new lump sum will be offered as an alternative to receiving a War Disablement Pension. It will not be the right choice for everyone, but at least offers some choice where none existed before. The Government initially announced the new lump sum would only be payable to veterans diagnosed after 12 December 2015, but after an outcry from veterans and others, extended the scheme to all veterans with a diagnosis of mesothelioma.

Lord Alton and MP have kept the debate about funding for mesothelioma research alive in Parliament. Lord Alton introduced another amendment in the House of Lords in December calling on insurers to be levied to fund research. BBC Breakfast News covered the story and interviewed Trevor Barlow, a member of our ‘Living Well with Mesothelioma’ group (see below) and Kim Harrison, a solicitor with one of our panel firms. The interview was live and the presenters announced that there had been such a positive response to what Trevor had said that they would repeat the interview an hour later and put a video clip up on their website.

This year we welcomed a new member of staff, Rob Rayner, who joined us at the end of February. Rob was taken on to help with the increasing workload which had previously been difficult to manage when one of the two staff members was on leave. Rob works three days a week and his appointment has allowed Jeff Eaman to reduce his working days from 5 to the three he had originally been engaged to work (Jeff had increased his days to help deal with the workload). Rob had previously worked at Welfare Rights and currently also works part-time at Salford CAB. He has brought a good background of advice work experience with him and has sharpened up our technological and social media output (not a difficult job, admittedly).

October 2015 also saw the establishment of the ‘Living Well with Mesothelioma’ support group for patients and carers/partners. This is a joint initiative between GMAVSG and Lorraine Creech, Mesothelioma UK Specialist Nurse at Hospital. This is a welcome development and a much needed resource.

2. Advice and support for asbestos victims

We saw just under 300 new referrals in 2015, about 22 more than the previous year. Over 45% of these were people with mesothelioma.

The overwhelming majority of these referrals come direct from hospitals in Greater Manchester, with a few referrals coming from Lancashire hospitals or solicitors.

A fair number of claims result in appeals or reconsiderations when Industrial Injuries Disablement Benefit is wrongly refused. The most common dispute concerns Diffuse Pleural Thickening claims which must show evidence of ‘obliteration of the costophrenic angle’ (lower part of the lung) on x-ray to succeed. Claims are often refused because DWP Medical Services have failed to obtain the necessary radiological evidence (or have misinterpreted it). While most appeals are successful, delays in the process mean claimants have to wait several extra months before receiving the money they are due.

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Case work reporting period 1 January 2015 – 31 December 2015 Disease Number % Visits per week Visits per week (all) (meso) Mesothelioma 134 45.4% 5.7 2.6 Asbestosis 64 21.7% Pleural Thickening 44 14.9% Lung Cancer 26 8.8% Lung Cancer & Asbestosis 5 1.7% Lung Cancer & Pleural Thickening 1 0.3% Asbestosis & Pleural Thickening 18 6.1% Pleural Plaques 3 1.0% Total 295 100%

Number of referrals by type 2015

160

140 Mesothelioma

120 Asbestosis

Pleural Thickening 100 Lung Cancer 80 Lung Cancer & Asbestosis

60 Lung Cancer & Pleural Thickening

40 Asbestosis & Pleural Thickening

20 Pleural Plaques / Unknown / Other

0 Number %

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3. GMAVSG activities

3.1 Action Mesothelioma Day The theme of Action Mesothelioma Day in 2015 was ‘Hope for the Future’. The International Mesothelioma Interest Group (iMig) had already announced that their next biennial conference, bringing together the world’s leading mesothelioma researchers and clinicians, would be held in the UK in May 2016. Researchers were optimistic that there could be significant breakthroughs in tackling the disease on the horizon.

Professor Luciano Mutti spoke at the public meeting about some of the latest research initiatives offering promising results. A panel of experts comprising Professor Mutti, Dr Paul Taylor (Consultant Respiratory Physician at Wythenshawe Hospital) and Lorraine Creech (Mesothelioma UK Specialist Nurse at Wythenshawe Hospital) answered questions from the audience.

Before the public meeting, 7 local MPs had addressed a rally in Lincoln Square. The MPs who spoke in Lincoln Square were: (Stretford and Urmston); Mike Kane (Wythenshawe and Sale East); (Rochdale); ( East and Saddleworth); (Manchester Central); Sir Gerald Kaufman (Gorton); (Stalybridge and Hyde);

The Dove Release was led by Tom Wyatt, who lost his dad Trevor to mesothelioma and Damara who lost her grandad Gordon Marriott to the same disease. Margaret Poole, who lost her partner Terry to mesothelioma, introduced the Dove release and the speakers. Over £20,000 was raised for mesothelioma research by our supporters’ sponsorship of the Dove Release, a fantastic effort from all those who contributed.

3.2 Living Well with Mesothelioma Group We helped set up this new support group for mesothelioma patients and carers with Lorraine Creech, Mesothelioma UK Specialist Nurse at Wythenshawe Hospital. GMAVSG Trustees agreed to fund the setting up of the group, to pay for room hire, refreshments and publicity. The group meets on the first Monday every month, from 1.30 p.m – 3.30 p.m. at the Cross Street Chapel in central Manchester. Lorraine has organised an interesting series of speakers and events, ranging from Tai Chi to medical research. The first meeting took place in October and the group has gone from strength to strength, with attendance regularly exceeding 30 people. The support, solidarity and empathy the group give to each other is truly inspiring. It is clear from the numbers attending, and the feedback we are getting, that people appreciate the opportunity to meet and share their experiences and we are optimistic that this spirit will be maintained. Lorraine is to be commended for her hard work in getting the group up and running.

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3.3 Asbestos Victims Support Groups’ Forum UK (The Forum) GMAVSG has continued to play a full part in the networking and campaigning activities of the Forum, and hosts alternate meetings along with the West Midlands Group.

Graham Dring was elected Chair of the Forum in September 2015 and also represents the Forum on the Oversight Committee of the Diffuse Mesothelioma Payments Scheme (DMPS). We continue to fight for improvements to this scheme, including paying those earlier claimants, who only received 80%, full compensation. We have called on the Government to increase the funding of the DMPS by making insurers pay the contributions they said they could afford (3% of Gross Working Premium they receive from selling Employer Liability insurance) so that the necessary reforms can be achieved. And we will continue to campaign for a similar compensation scheme for sufferers of other asbestos diseases (asbestos-related lung cancer, asbestosis and pleural thickening) who face the same problem of finding someone to sue when an employer is no longer trading and their insurer cannot be traced. The insurance industry let these people down in the same way that they let down people with mesothelioma, by destroying or mislaying the documents that would have established who was liable to pay compensation. They have the same moral responsibility to these victims and should pay up to right this wrong.

Mesothelioma research is also a key priority for the Forum. We have spoken before about how poorly funded mesothelioma research is. This lack of funding, and the uncertainty this engenders, discourages researchers from focussing on mesothelioma and leads to a vicious circle of poor funding – few research proposals, which allows Government to blame researchers for the problem. We need to see not only more money going into mesothelioma research, but a system of sustainable funding that will attract the best researchers and encourage continuity and development. Various ideas about how to do this have been suggested which, if nothing else, have kept the issue in the spotlight. The Forum has been speaking with both politicians and researchers about the best way forward. 2016 may well see progress with plans for a National Mesothelioma Center of Excellence and more open collaboration between researchers following the International Mesothelioma Interest Group conference.

3.4 Oral History Project 8 people participated in this project which was co-ordinated by Nigel Ingham. The aim of this project was to record the stories of people who had either lost a loved one to mesothelioma, or who were living with the disease themselves. During the course of the project it became apparent that there were important questions of access that had to be carefully considered. Not everyone wanted their story to be publically available. Another consideration was the potential upset that could be caused, for example, to someone who had been newly diagnosed with mesothelioma if they came across some of the testimonies given without warning of what they might hear or read.

All participants were given their own copies of their transcripts and recordings. Strathclyde University has agreed to archive the stories and discussions about how, and by whom, these stories can be accessed are ongoing.

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4. Support Group The Support Group is the bedrock of our campaigning work and continues to provide a welcoming environment to members old and new, combining social activities along with the campaigning.

One campaign that members of the Support Group were actively involved with was the HSE Beware Asbestos campaign which aimed to raise awareness amongst small traders/self- employed about the dangers of asbestos. Lauren Ross agreed to be a media spokesperson for the campaign and was interviewed for TV and radio, as well as featuring in a lengthy article in the Mail Online. Lauren attended the press launch of the campaign in London along with Vera Rigby, Ann Oldham and Graham Dring. The press launch also included the unveiling of an artwork installation by award winning artist Joe Joiner, who lost his grandmother to mesothelioma.

The summer outing this year was afternoon tea at the St John’s Hotel in Manchester and we had a very enjoyable Christmas lunch in the Midland Hotel.

In between all this activity, there was still time for the annual pilgrimage to Spain.

As usual the Group did so much to make Action Mesothelioma Day a success and all three workers at GMAVSG wish to express their thanks for their continued support and hard work.

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5. Meetings and events 14 January Mesothelioma Support Group, Manchester 17 February Asbestos Victims Support Group Forum meeting, Manchester 18 March Mesothelioma Support Group, Manchester 27 March Meeting with Mike Kane MP, Manchester 28 April Workers Memorial Day, Manchester 29 April Asbestos Victims Support Group Forum meeting, Birmingham 19 May Asbestos Victims Support Group Forum meeting, Birmingham 20 May Mesothelioma Support Group, Manchester 16 June Asbestos Victims Support Group Forum meeting, Manchester 24 June AGM + Mesothelioma Support Group, Manchester 3 July Action Mesothelioma Day, Manchester 21 July Asbestos Victims Support Group Forum meeting, Manchester 29 July Summer Outing, St Johns Hotel, Manchester 16 September Mesothelioma Support Group, Manchester 22 September Asbestos Victims Support Group Forum AGM, Manchester 5 October Living Well with Mesothelioma Group, Manchester 15 October DMPS Oversight Committee, London 2 November Living Well with Mesothelioma Group, Manchester 11 November Mesothelioma Support Group, Manchester 17 November Asbestos Victims Support Group Forum meeting, Manchester 25 November Benefits update talk for Slater & Gordon staff, Manchester 26 November Talk for Lung Cancer Support Group, Wigan 1 December Asbestos Victims Support Group Forum meeting, Birmingham 7 December Living Well with Mesothelioma Group, Manchester 8 December All Party Parliamentary Group meeting, London 18 December Mesothelioma Support Group Xmas party, Manchester

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6. Donations and financial report

We would like to thank all those made donations to our charity, so many of which are in memory of family and friends who have died from mesothelioma. If we have missed anybody, please accept our apologies.

6.1 Donations in support of GMAVSG (direct) Mr Tom Lyth Mr Andrew Walker Mrs Barbara Lynch Mr D Winwood Mr Francis Maguire Mrs A Slyman Mrs Margaret Holland Mrs S Duddle Mrs Elizabeth Kenyon Mrs Sylvia Walker Mrs Margaret Holland Mrs B Youd Mrs Jean Doxey Mrs Rita Houston Mrs Barbara Holgate Mrs Gibson Mr A Jones Mrs Agnieszka Grabianka- Hindley Mr David Walton Mr T F Barrington Mr JW & Mrs A Purdey Mrs Gibson Manchester City Supporters Club Mr Alan Wilkinson Mrs C Briggs Mr and Mrs Craven Mr Harry Tideswell Mrs Lesley Norton Mrs P Mabbott Mr Trevor Briggs Mrs Janice Bentham Mrs P Shaw Mrs M Hulmes Mr Derek Ingham Mrs Bridget McCormack Geoffrey Beresford Mrs M Flood Kazia Orzel Mr Denis Harrott Mr S Schofield Mrs Yvonne Bolton Mrs Ryan Saddleworth Ramblers Mrs Jean Graham Mrs Pamela Moss Mr Stephen Barksby Mr Tony & Mrs Sheila Eccles Mrs P M Branthwaite Transport for Greater Manchester Mrs M Yates Mr Ian Brown Mrs Dorothy Gough Mr Derek Stokes Mrs Gillian Forester Mr Mark Dunning Mrs Carolyn Tregaskis Mrs Julia Child Mrs Melanie Robinson Mrs Veronica Shaugnessy Leslie Lever Mrs Helen Mills Mrs Beverley Brocklehurst Unite Preston & South Ribble Branch Mr Daniel Jones

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6.2 Donations in support of mesothelioma research on AMD 2015 Mr J Allen Diana Fos Mr Appleton Mrs M Foster Mrs A Armstrong Mr S Foxall Mr A Askham Mrs J Foxcroft Mrs P Bailey Mrs J Fricker Mr J Baines Mr L Gallagher Mrs J Baker Mrs D Gough Mrs J Barber Mrs F Greenwood Mr T Barlow Mr R Grime Ms R Bennell Mr E Guffick Mrs R Bennell Mrs D Harrison Mrs B Birtles Mrs K Hartley Mr J Boland Mrs L Hatfield Mrs D Borrell Mr & Mrs L Hollowood Dr C Bragg Mr F Holmes Mr K Britton Mrs P Hough Mrs B Buck Mrs R Houston Mr & Mrs S Buckley Mr A Howlett Mrs M Burns Mrs S Hughes Mrs P Carline Mr B Hughes Mrs L Chambers Mrs M Hughes Mr V Claxton Miss S Jackson Mrs D Collins Mr A Johnson Mr R Cooper Mr & Mrs J Keefe Mr I Copland Mrs B Kelly Ms M Corner Mrs D. Kelsall Mr W Corrie Mr E King Mr I. Crawshaw Ms E. Knight Mrs J Crisp Mr J Knight Mrs S Critchley Mrs E Knowlton Mr & Mrs S Cross Ms E Krolikowski Mr E. Cullen Mr P Lancaster Mr P Curmi Mrs B Lees Mrs J Davenport Mrs J Llewellyn Mrs A Deering Ms S Lucas Mr P Donohue Mrs E Mannion Mrs J Doughty Mrs A Marriott Mr J Duffy Mrs C Marriott Mrs E Edgar Mrs S Mason-Cave Mrs G Edge Mr K Mayes Mr W Elliott Mr R McEwen Mr A Elms Mrs J. McKenzie Mrs E Etchells Mr D McLaren Mrs M Evans Mr C Medd Mrs A Fielding Mr S Millward Mr T Morris Mrs M Rusk Mrs J Murray Mr J Shaw Mr P Nash Mr George Simpson Mr T Nedderman Mr & Mrs K Smith Mrs M Newton Mrs W Smith

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Ms J Nicholls Mr & Mrs N Swann Mrs A Nickol Mr H Taylor Mrs P Occleshaw Mrs J Taylor Mrs M O'Neill Mr E Thomas Mrs C Parry Mrs B Thornley Mrs J Pennington Mrs K Thorpe Mr D Poizer Mr Tom Titterton Mr B. Poizer Mr L Todd Ms J Pollard Mrs M Tong Ms M Poole Mr R. Tonge Mr T Price Mr G Walker Mrs M Quinn Mr G Walsh Mr K Reeves Mrs M Wheatley Mrs V Rigby Mrs I White Mr S Rigby Mr & Mrs K Williamson Mr A. Riley Mrs M Wilson Mr A Robinson Mrs V Winstanley Mrs E Robinson Mr J Withington Mrs M Rodgers Mr D Wray Mrs J Rothwell Bernie Wright Mr J Rowbotham Mrs A Rowlinson

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7. Acknowledgements 7.1 Solicitors Panel Following mergers between some of our panel solicitor firms (Pickerings and Pannone becoming part of Slater & Gordon LLP, MPH becoming part of Irwin Mitchell, our panel for 2015 comprised the following firms: Slater & Gordon; Irwin Mitchells; Thompsons; and Leigh Day. Leigh Day have a great deal of experience in asbestos litigation and were accepted on to our panel in 2015 by the Trustees on agreeing to open an office in Manchester. We would like to thank all members of our panel for their continuing good work on behalf of our clients and their support for our charity throughout 2015. 7.2 Website We would like to thank Mervyn Payne for maintaining our website throughout the year and for working with us to improve and update the website, which is still ongoing. 7.3 Trustees Trustees who have supported and directed our work in 2015: Caroline Bedale; Anthony Coombs; Barbara Eason; Ann Oldham; Vera Rigby; Geoffrey Tweedale.; Tony Whitston.

Graham Dring, Jeff Eaman and Rob Rayner GMAVSG 22 June 201

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